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Desperate for Advice for Young Quad in Massachusetts

Hi everyone! This is my first post in the forum. I'm writing on behalf of a 33 year-old male quadriplegic, for whom I spent several years caring 24/7. Right now he resides in a nursing facility in Massachusetts, and we're in desperate need of help.

Since moving him to the facility last March, we have encountered constant battles with his care needs, including (but absolutely not limited to): their lack of care led to a pressure sore that has kept him in bed for months; they took control of his SSDI without his knowledge or permission; and they have cut down the length of his nightly bowel regimen several times (it's now at 20 minutes), leading to him experiencing autonomic dysreflexia every night.

The bowel regimen is primarily what I'm here to ask about. Massachusetts apparently has specific, restrictive policies regarding bowel regimens and the performance of digital stimulation, but all research and experience shows that what we've been asking for (digital stimulation every 10 minutes for 60-90 minutes) is what should be done to keep him healthy. So:

How do other quadriplegics handle their bowel regimen in nursing facilities? What does and doesn't work? Are there alternatives we should explore for him?

I would also encourage you to set up a time to speak with the director of the facility and the director of nursing. Go prepared with the Guidelines for Neurogenic Bowel care that are posted on line here. During the meeting, I would encourage you to not be accusatory - merely you are trying to inform them of how to prevent the possibility of this young man having a stroke. (that should get their attention). I am sure that you have tried this, but it may be worth another shot.... and I would also get the Massachusetts Walks Again organization involved.

What about this young man's physician? They have to prescribe the bowel routine.... I would think that they would be concerned that their orders are not being followed.

When I was at Boston University, they had an entire floor dedicated to spinal cord rehab. They were very professional. They offer many resources through their website including free legal consultation.

I'm just writing to add my sympathy. I'm paraplegic, but had a constant battle getting any bowel help at all in all four nursing homes I've been in. Hospital rehab hadn't taught me digital stimulation. At one nursing home, a kind, experienced nurse gave me digital removal of feces on two occassions, and then the Director of Nursing told him he wasn't allowed to do it again. After that, I did it myself, but with no equipment and no training. It was a nightmare. I told the Administrator that I needed it and had done it myself. His response was to threaten to evict me! I lived in fear of being discovered by an aide while digitally removing my own feces. I was in nursing homes for a year and a half, and I fought for my life to get out and go home.

Many nursing homes (and even hospitals) prohibit licensed nurses (anyone other than a physician) from doing manual disimpaction of stool. This is an outdated rule, for several reasons. First of all, manual removal of stool in someone with a SCI is NOT removal of an impaction. It is simply the manual removal of stool from the rectal vault. Secondly, the supposed reason for this prohibition is that such a procedure would cause excessive vagal stimulation and cause heart problems. Since the vagus does NOT innervate the rectum or sigmoid colon, this is a bogus reason.

In ABs, it is possible for ascending sensory messages from the rectum of pain during disimpaction could trigger a vagal response once this information gets to the brain. Unless you are very incomplete, this does not occur in people with SCI, although it can of course trigger autonomic dysreflexia (this is NOT due to vagal stimulation but due to stimulation of sympathetic nerves).

Being constipation and NOT having bowel care done properly can also cause AD, so refusal of a nursing home to have a licensed nurse do bowel care including either manual removal or digital stimulation (depending on which you need to use) could actually be considered negligence if it led to AD episodes for you.

I have even had nursing homes who refused to do either manual removal or dig stim because they were convinced (in some weird Puritanical world) that the patient was requesting this for "sexual gratification"!!!

I would be very surprised if manual removal of stool by an RN or LVN/LPN is prohibited by state licensing bodies in any state in the USA. I would want to see this rule in writing if someone makes that claim. It is much more likely that this is due to a outdated administration and leadership, and not wanting to have to do something they consider "disgusting" for your care. Be sure you have a physician's order for such care, and also speak to your state nursing home ombudsman if you are getting no where with the director of nurses or administrator of the facility.

Hi everyone! This is my first post in the forum. I'm writing on behalf of a 33 year-old male quadriplegic, for whom I spent several years caring 24/7. Right now he resides in a nursing facility in Massachusetts, and we're in desperate need of help.

Since moving him to the facility last March, we have encountered constant battles with his care needs, including (but absolutely not limited to): their lack of care led to a pressure sore that has kept him in bed for months; they took control of his SSDI without his knowledge or permission; and they have cut down the length of his nightly bowel regimen several times (it's now at 20 minutes), leading to him experiencing autonomic dysreflexia every night.

The bowel regimen is primarily what I'm here to ask about. Massachusetts apparently has specific, restrictive policies regarding bowel regimens and the performance of digital stimulation, but all research and experience shows that what we've been asking for (digital stimulation every 10 minutes for 60-90 minutes) is what should be done to keep him healthy. So:

How do other quadriplegics handle their bowel regimen in nursing facilities? What does and doesn't work? Are there alternatives we should explore for him?

Thank you for your help!

why not get a colostomy its a lot better for a quad especially I call it independepence freedom